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Broken-Hearted Daughter

jcodispoti314's picture
jcodispoti314
Posts: 4
Joined: Mar 2017

I am writing on behalf of my beautiful mom, who was diagnosed with Stage IV renal cell carcinoma on July 2, 2015, a day in which I will remember for the rest of my life.  Since that day, my life as well as the rest of my family's life has forever changed.  I have watched this group and the people that talk on here and share their stories, and have tried to convince my mom to join for the support and encouragement that you offer to eachother.  It is truly amazing and I commend you all for your courage and the inspiration provide.  

On July 2, 2015 we were told that my mom, Jane (63 at the time), had a huge mass on her right kidney.   On August 6th, she had a radical nephrectomy and was told that the mass was the size of a football.  There was metastatices in the lungs,  the left adrenal gland, and the lymphnodes.  The doctor said he removed many lymphnodes, as well after he removed the kidney. My mom recovered and were were off to plan her course of treatment. She was recommended for a clinical trial, but unfortunately did not qualify because when they did a brain MRI necessary for the entrance into the clinical trial, they found mets on the brain.  In September 2015, she received ten days of brain radiation and the day after the last session her hair was falling out in clumps and she was completely bald.  Okay, so now, we were ready to start treament, but wait now she was having back pain and there was small tumor on her spine.  This area required radiation as well.   My mother went through another ten days of radiation on the spine.  Radiation did a number on her....lost some hearing, threw up for months, I could go on and on.  

Finally, in December of 2015 she started her treatment four pills of Votrient.  She had some trouble tolerating it, but the cancer was showing signs of shrinking.  The Votrient was working!!! And, no more spots of cancer popping up!.  She had a solid nine months of Votrient and in August 2016, there was some growth reported on the catscan report.  The doctor said if they observe growth again they will cahnge the meds.  In October, her next scan showed growth again so the Votrient was retired. Now it was time for this amazing new immunotherapy called Opdivo.  Although, my mom has tolerated the Opdivo well I question whether or not it is working.  She has had a cancerous growth moved from the vaginal area and now they discovered mets in her right femur bone.  She is scheduled for surgery on March 8th to remove the cancer from her bone.  It is a 3 hour long surgery and the recovery will be fairly long (a 4-7 day hospital stay).  

All I can say is that my heart is broken.  My wonderful mother has been through hell and back.  We all try to keep postive and encourage her, but how many times can one person keep getting knocked down?? I am assuming that the doctors are performing this surgery thinking that they can help her after??? Can they??? I am at such a loss and would give the world to have my mom well again.  

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

jc,

 

The one thing your mother has going for her and that is a daughter who cares so much. That is and will continue to be priceless in her recovery.

 

 

Icemantoo

jcodispoti314's picture
jcodispoti314
Posts: 4
Joined: Mar 2017

Thank you so much....icemantoo...... Except I do not know what to do or say to her anymore to make her feel better.  We are all at such a low spot and so incredibly scared.  I pray every day for a miracle.  I read all of your stories on here and realize there is hope, but my mom has mets all over.  Is there still hope for her?

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Well, I am so sorry for ALL your mother is enduring. Of course this affects you as well. But I am sure glad she has YOU on her side to help her get through these ups and downs. Sometimes there are no words. There are choices, and sounds like some hard ones. Glad you could come here to vent. What is your first name, may I ask?

We're here for you and your mom.. all the way, if you want us to be, I mean!

Sending you healing vibes and a gentle hug,

Jan

jcodispoti314's picture
jcodispoti314
Posts: 4
Joined: Mar 2017

Hi Jan,

My name is Jennifer and my mother is Jane.  I would love for you to be here for us.  I have been watching you guys and your posts since August of 2015.  I always read the posts because I wanted some reassurance that mom would be ok and it eased my mind to know that other people with kidney cancer were doing well after all was said and done.  I decided last night to join so that I could tell my mother's story.  I am so angry and frustrated that I can do nothing to help her.  It is so hard even as an adult, to see my mom and dad cry and be scared.  Do you think there is any hope?

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Reading your post has inmensely touched my heart.  I can olnly imagine your pain and imagine how sad and scary your mom's illness affects you all.  Very sad to think what your mom is going thru.  I have no answers and sometimes there are just no words.  I think we were all in owe of seeing how our daily lives, our routiness and all that we we took for granted for years, all the sudden takes a blow and is greatly chalenged and we have to adjust to this and live thru it because there is just no way around it but thru.

Hope is how we can go on and its the very last thing we should let go of but at the same time we have to somehow, as painful and sad and scary as this can be, realize and accept that we are all mortal beings and that sickenes as health, being born, living and dying are also a part of life and we are all going to experiece this one day and so are our loved ones, everyone.  So what is there to do?  I believe that it is doing what you do so well:  give Love!  Give your mom lots and lots of love, be present and also be courageos because we need to be, she needs you to be and you need it too.  I don't know what more to tell you...  Just wishing with all my heart that you find confort in love and that the miracle you pray for comes true.

Mary

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Again, I can appreciate what you all are going through. All the ups and downs of treatments, some hope, then hope is dashed. It definitely is a battle. I also recommend another site for even more support and information: smartpatients.com and join there too.

No one, not even doctors can know for sure. Some doctors/oncologists are more realistic, yet not always helpful on an emotional/spiritual level. Still others search and search for more and more options.  For all the setbacks, there is something that works. Spiritual and mental counseling may be a good idea, if your mother and father are open to that.

Again, I quote another member here who says, I am not dying from cancer, I am living with it. It is such a personal decision and choice to make, isn't it? So much depends on side effects, progress and if it is helping. Many here keep trying and trying.

So again, Jennifer, I offer you our support, best we can. There are many here with such good hearts and experiences. I hope more will respond to your post. You may want to write a new post asking for information/support for those with stage IV experiences similar to your mother or in regard to her treatment name. That would narrow this down for more specifics.

Remember, try real hard not to go to far into the future. Use the gift of today and make the most of this loving relationship. Speculating in fear may only wear her down at a time she needs her energy the most to fight this monster.

Let us know how you all are doing if you like ..always here for you!

Hugs, Jan

 

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Jennifer, I am so sorry to hear about your mom... Hugs... Unfortunately I can't give much practical advise? Perhaps. You can try Smartpatients? I've heard there is ton of priceless info about treatments. And come here for emotional support - we are a second family, saving each others sanity, sharing good and bad moments.

if your mom is not joining herself, perhaps you can tell her stories of our Stage 4 guys, who are living with cancer, not dying? Fox, Donna, Footstomper, Mark - to name a few...

take care of yourself as well. - your mom needs you. You are not helpless - you are with your mom at her dark time, and this is most important thing

APny's picture
APny
Posts: 1987
Joined: Mar 2014

So many others have said it more articulately than I could and I agree with them. You being there for her is the best thing you can do for her. As for not knowig what to say to her, sometimes all we really want is someone to listen or just to be there for us and not necessarily say anything. Being a care giver and watching a loved one go through this must be incredibly difficult. You're all our angels and without you things would be 100 times worse. And yes, there's always hope, so hang on to that. Bless you for being such a good daughter.

jcodispoti314's picture
jcodispoti314
Posts: 4
Joined: Mar 2017

Thanks everyone so much for your kind words.  I will definitely check out smartpatients, too.  Allochka, I know you mentioned other stage 4 kidney cancer patients that are members on here.  How are they progressing? Do they check posts often? It would bne nice to hear some postitive stories. Thanks so much. God Bless you all.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

I know others have offered words of encouragement and support, but I also want to tell you my thoughts and prayers are with you.  I agree completely with the others--your presence is all your mom will need.  Don't worry about what to say or how to say it--just be there.  I was stage 1 with a 5.3 cm mass.  I know this was a blessing, but it still had a huge impact on me.  I can't tell you how important it was for me to have my wife and my parents with me through this ordeal.  I can't remember them saying much but their presence helped me in such a deep way. 

I wish you and your family well.

Stub

Deanie0916
Posts: 321
Joined: Nov 2016

So Sorry to hear about your mom. I echo what others have said here, hope you know what a blessing you are to her. I am not a stage IV survivor, but there are many inspiring stories from the folks here. Sending prayers, love and hugs to you and your family.

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

Similar story to your mom's beginning into Kidney cancer.  I had my first met show up in my brain.  Surgery removed it, and I did not have any bad side effects because of the surgery... Then they found multiple mets in my lungs.  Sutent worked for a long while, until the side effects for me became too much.  My second line of treatment was Opvido... that was good for the last year,   now I am in a trial that has kept the Opvido going, and added Ibruintib... I will not have any test until the end of march to see if that has shrunk anything... I have been living with kidney cancer for over 4 years now, and beleive I have a lot longer to go.

There are many of us with the stage 4 number.  This cancer is becoming a manageable disease because of the many new drugs that have been approved.  Your Mom will hopefully respond well to the Opvido, and the rapid finding of new mets can slow down.  It does come down to each day one at a time.  Before you realize it, weeks become months and become years.  My prayers for you family.  I am happy you found this site.

Pam

 

 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Jennifer, You're doing so much by loving your mom, letting her know you love her, and being present and a witness to the life and love you share together. 

Your post made me think of the children's book, "Guess How Much I Love You." How DO we measure our love for our moms and other special people in our lives? Here's a link to an animation of the story -- https://www.youtube.com/watch?v=Ze-XaKq3gU0

Keep us posted -- Hugs, prayers, gentle thoughts heading your way...

Jerzy

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

that's all.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

God bless you and the support you give.  It's a tough road you & your family travel, make no mistake, but never give up hope.  I am not a Stage IV but there are many here that are and somehow they carry on.  Maybe it's due to a strong support system such as your mom has.  If there is one thing I've learned in my own cancer journey, family members cancer diagnosis, my mom's alzheimers diagnosis, etc etc, life is short, no matter how many years we are blessed with.  Celebrate life's moments, those moments are the makings of memories that stay with you forever and will get you through virtually anything.  I've learned too that memory making doesn't have to be some big flamboyant party, it also can be those quiet, hand holding moments.  My latest moment was with my mom last week (I only get to see her a few times a year because of distance), although she is end stage alzheimers, there was a glimmer in her eye at one point that made me feel like she had some recognition of who I am, even if she can't verbally express that anymore. 

I will be praying for you & your family,

Donna~

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Donna, I just wanted to send you a big, warm hug!! God bless you and your mother. Remember, no matter where you are, you can speak to your mother, spirit to spirit! Her spirit is alive and well!

Warmly, Jan

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I appreciate your input. 

Donna~

donna_lee's picture
donna_lee
Posts: 963
Joined: Feb 2009

What Jane has been through thus far has been emotionally traumatic for all of you and physically devastating for her. I, too, was D'xd at Stage IV just on the Ultrasound alone.  And the surgeons didn't know what they'd find on the first surgery.  On the second and third surgeries they knew what they were going after.

I didn't have radiation to shrink anything or drugs.  All I had was Hope...that it wouldn't reoccur again; that if it did, I'd be strong enough to fight the fight; and a family and friends who cared.

You mom has hope-just like I did.  And added to that is the possibility that the next drug may be effective and/or more effective that the most recent drug.  And she definitely has a family that cares.  You are doing what you are capable of and so is she.

Sometimes I will catch my husband just staring at me, and ask him what he's thinking.  He usually responds with something like, "you've been through a lot, or I'm sure glad you fought to survive."

You mom is in the same boat, because she wants to be there for you and watch grandkids grow up, or have the next birthday, see the next sunrise, etc. etc.  I had just turned 63 when I was diagnosed accidentally in 2006.  So I can related to her and to what you're going through.

Do what you can for and with her, but don't forget to take care of yourself. You still have a family who needs you, too.  Ask her Dr. if there is any support group for caregivers in your region (close enough to attend), or if there is any recommended reading.  And remember that you have us.

Take care and Hugs,

donna_lee

Allochka's picture
Allochka
Posts: 922
Joined: Nov 2014

Jennifer, yes, they post pretty often. You already see Fox, Donna Lee, Pam here. Please check their stories - lots of hope, strength and love of life there!

tracylev
Posts: 17
Joined: Mar 2017

Hi Jennifer, I'm so sorry you are going through so much right now. I have had RCC for over a year now. I had my left kidney removed in December 2015. it has spread to my lungs but nowhere else right now. I have not wanted to join any support groups or connect with others like me either. Yesterday was the first day I reached out to this group.  Your mom might change her mind and wish to connect at some point Later. 

It sounds like your mom has a good support system and a wonderful supportive daughter. I'm so sorry your heart is breaking.  If your mom doesn't mind, you should talk to her doctors about her prognosis. Ask about all her options. I'm so sorry your mom is suffering. I'm so sorry you are suffering.

Tracy

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I was diagnosed with Stage IV RCC in September of last year, at the age of 50. After surgery and radiation to deal with a tumor on my spine, I was put on Votrient to deal with multiple bone mets throughout my body.

After three months on Votrient, scans showed that it was ineffective. I'm in between treatments right now as I wait for my insurance company to approve Opdivo.

You and your mother have more experience with this crap than I do. She's very lucky to have you on her side. Likewise, I'm very lucky to have my wife on my side, she is my hope. 

Sorry I'm not a very inspirational writer. As long as you all keep fighting, there's hope. Best wishes to your whole family.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

was successful yesterday jennifer. Best wishes to mom.

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hi, Jennifer. Sorry to hear about your mom. I know how hard it is to watch someone you love go through this.  I was just wondering if they tried radiation on her mets in the bone. Also if they offered avastin and there is one other i thought of that  usually helps keep bone mets at bay.  Someone who remembers the name please help me out if you can think of it.  Any indication that those bone mets were there before?  Does mom usually get a full body scan?  When Opdivo is used, sometimes the body reacts with inflammation and the whole scan lights up.  I hope the surgery went well.  Just know we are all here praying for you and the family and mom.  There are plenty on the boards here who went through the ringer, they are still here.  :)  Hugs!  XO  Please take time for yourself when you can. Keep us posted.

Fox, how are you doing?

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